Sunday, March 28, 2010

Written by Grandma Margie in 2008, a year after Matthew's birth. This is a story about the day Matthew was born. It was originally published on a website called Lives Touched By Down Syndrome but it seems the website no longer exists. With permission, I am sharing it here.

One of my favorite jokes is about a man who's stuck on top of his house, surrounded by quickly rising floodwater. Two boats and a helicopter come to rescue him, but he waves them away saying, "I'll put my faith in the Lord. He'll save me."

The muddy water swallows the man and a few minutes later he stomps up to the gates of heaven and yells at God. "I put my faith in you and you let me drown."

"No, I didn't," answered God. "I sent two boats and a helicopter to get you."

As a person who has struggled with faith and religion most of her life, I believe, after much reluctance, that this is true. People have come to my rescue many times during my life, and more often than not, I didn't even know that I needed help.

On the morning before my seventh grandchild was born, I drove my daughter-in-law, Ria to her doctor's appointment. An ultrasound showed that the embryonic fluid was low so we headed to the hospital. I suggested an early lunch, but my normally famished daughter-in-law was too excited and had eaten a late breakfast. The doctor and staff at the Woman's Center were in a tizzy over our unannounced arrival, but did another ultra sound anyway.

"Here's his heart," said the technician pointing at the screen. "It looks great, a good strong heartbeat. Everything looks good except the fluid is low. I don't think you'll be going home."

I took pictures with my iPhone while Ria called my son, Bill, and told him the exciting news. Bill and Ria met in Melbourne, Australia while they were graduate students at Monash University. Bill attended for six months during an exchange program. Ria graduated with a master's degree in International Business and Bill finished his MBA at the University of Missouri. It's a romantic story filled with lasting love, commitment, and determination.

After Bill arrived carrying numerous bags, I walked to the hospital café for a late lunch. It was crowded so I sat at a counter that faced a courtyard filled with flowers. A few minutes later, an older woman dressed in a rust-colored suit sat next to me. After exchanging pleasantries, she said her husband had surgery yesterday, he was doing well, and they hoped he would go home tomorrow.

When I told her my story, she smiled and said that she was envious. Her oldest daughter had given them two wonderful grandchildren, but her younger daughter and her husband had decided not to have children. "Our son has Down syndrome," she said matter-of-factly, "and she's worried that she'll have a baby with special needs."

I didn't know what to say, so I acknowledged her words with a friendly nod. I was surprised by her candor, but not uncomfortable. For as long as I can remember, people have confided in me.

"Our daughter loves her brother," she explained, "but she doesn't think that she can take care of someone with special needs. I'm sorry she feels that way because her life would be so much richer for it. Our son has added so much joy and love to our lives. Taking care of him wasn't difficult; all he needed was love. That's what we all want, isn't it? We just want to be loved. I have no regrets but I'm afraid my daughter will someday." She shrugged her shoulders, "But it's her choice and we stand by her."

"How's your son doing?" I asked, fascinated by her story and insights.

"He's all grown up," she said proudly, "a fine young man. He has a great life. He lives in a group home, has a job he likes, and so many friends. We visit him, he visits us, and we talk almost every day."

I felt a mixture of awe and uncertainty as I tossed my trash. I'm not a superstitious person and I wasn't afraid of Down syndrome, but I was worried about the unknown. Medical science has removed most of the dangers of childbirth but not all. I didn't tell Bill and Ria about my conversation in the café when I returned to their room. I wished them luck, kissed them goodbye, and drove home.

A phone call from Bill summoned me to the birthing room early the next morning and I arrived shortly after our baby was born. I watched with pride and excitement while the nurses suctioned and cleaned our new grandson and gasped when he stopped breathing. A nurse suctioned him three or four more times. "Breathe," she told him. "Yes, that's better." Satisfied, she diapered and swaddled him into a neat little bundle and gave him to his happy mother. His cry wasn't as loud as other newborns I'd heard and I thought his breathing was too soft, but dismissed my concerns. The nurses were happy and I should be happy too.I accompanied Bill as he carried his son to be officially weighed and measured, then walked back to the room and watched as our baby successfully nursed for the first time. I was thrilled when a nurse took him to the nursery. I was still worried about his breathing and knew that they would check his air passages for mucus again. The phone rang a few minutes later. Did they have a pediatrician? Yes, but in Washington, an hour away. Would it be okay for the resident doctor to take care of him while he was in the hospital? Yes, of course.

We were concerned but continued chatting, the three of us still brimming with excitement until a nurse walked into the room. In a soft, professional but reassuring voice, she told us that our baby wasn't as pink as they wanted so they moved him to the special nursery where he could be monitored more closely. The pediatrician was examining him and would talk to us soon.

When the doctor arrived at Ria's room, he seemed a little shocked when he saw Ria, but didn't comment. He smiled briefly, introduced himself, and dropped his bomb without warning.

"I believe your baby has Down syndrome," he began. "He has pulmonary hypertension, which means his lungs aren't working as well as they should. His lungs could be underdeveloped or something more serious. We've called in a pediatric pulmonary specialist to examine him. Meanwhile, we're giving him oxygen, that's the treatment for this condition, and he's responding well. If he keeps improving we'll decrease the oxygen and see how he does. Pulmonary hypertension occurs occasionally in all babies, but it's more common in babies with Down syndrome and that made us take a closer look. Your son has a single crease in his hands and his big toe and second toe have greater separation. His body is thicker near his neck, especially his upper back, and he's having trouble maintaining his body temperature. All indications of Down syndrome. Didn't you have any tests while you were pregnant?"

Bill and Ria stared at him in disbelief and shook their heads. "We're young," Ria said quietly. "We didn't think it was necessary."

"Well," he said, impatiently, "I would certainly suggest genetic testing before you have more children. Does anyone in your families have Down syndrome?"

We shook our heads, unable to speak.

His expression softened and he seemed a little chagrined by his harsh words. "I guess I've gotten a little ahead of myself. I know I've dropped a bomb on you, one that you obviously weren't expecting, and I understand your shock. I also understand the impact this has on you and your baby."

He stopped again and I hoped he was finished. I wanted him to shut up and leave us alone, but he didn't leave. He gave Ria a quick smile and asked another jarring question. "May I ask your nationality?"

Her voice was soft but clear, "Filipino."

"Well, that's fine, I was just curious. I would be remiss if I didn't send this to the lab. The results will be back in about four days." He looked at us, waiting for questions.

"Send what?" I asked.

He seemed shocked by my ignorance. "A blood sample." He handed Bill and Ria a pen and a permission form and looked pleased when they signed it. "The lab will do a chromosome test."

When the doctor was finally gone, Bill held Ria as she sobbed and he struggled to be strong. "He must be right," she said quietly, "but how did this happen? Everything looked perfect on the ultra sound."

I sat on the bed hugging them. "We don't have enough information," I said. "Let's wait for the results of the test. Meanwhile we'll take care of him and love him. All a baby really needs is love and we have lots of love in our family. He belongs to us and we're glad he's here. We're keeping him."

A nurse rushed into the room with a wheelchair. "I'll take you to see your baby," she said, smiling. "He's a cutie."

As we stood looking at our little guy now dressed in a diaper and hooked up to oxygen and other things, I fell in love and silently thanked the loving woman who had given me the right words to say. All a baby needs is love. We all just want to be loved.

Matthew left the hospital two days after we were given the official news from a doctor who was gentle and kind. Matthew delights us with his easy smile and giggle, his eagerness to learn, his quiet determination, and keen interest in people. His parents do exercises with him every day—affectionately called "Baby Boot Camp"—and he's strong and healthy. His birth opened a floodgate of powerful emotions, feelings too often swept underground by our busy, hectic lives. We became closer as a family and worked out some differences that had crept in, almost unnoticed. We called it the "Matthew Factor" and we're happy he helped us move ahead. Our world is bigger now. A deeper love and purpose thumps louder in our hearts.

I still marvel at meeting that wise, wonderful woman and wish I could thank her. She gave me a glimpse of her son's life and said that his life was good. She told me he was happy, well loved, and added much joy and love to his family. He was a good addition to our world. She had no regrets and neither do we. To love and be loved is the greatest gift of all. An angel rescued me and I'm forever thankful.

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comments:

What a beautiful post! Especially written so lovingly by Matthew's grandma. It seems God sent that other woman to cross paths with your MIL so she would have the right words to say to you and the confidence to know that all will be OK. Thank you for sharing!

Very touching and beautifuly written. I love your blog, it has provided me with so much information and really helped me to see that things are going to be ok and my son is going to grow up happy and healthy and very loved.

Great story. Seems everyone I know who has a child with DS was given a little foreshadowing somewhere along the way. We had a close encounter with a child with DS after dating 6 months and I told my hubby, then-boyfriend, that if he couldn't handle something like that we could stop dating now. He said, "no problem" and we moved on. 15 years later, Brian and Michael are born to us and we both immediately recalled that conversation so long ago. Strange but settling. BTW - I've given you a blog award b/c you and your family and blog are a fount of information. Stop by and pick up the award when you get the chance... you deserve it.

This was beautiful! I truly believe that encounter your mother-in-law had with the woman in the cafe who has a son with Down syndrome was orchestrated to prepare all of you for what was to come....just so beautiful and touching!

That is a beautiful story. And I know you are a great Granny and support to Ria and Bill. My husband proposed to me in a hot air balloon and when it landed, which one can not choose the exact spot we landed in front of a small holding, A lady and her grown son came out to see all the excitement. When they heard we had just gotten engaged her son ran inside and came out with a beautiful Chrysanth flower and gave it to me. I never thought twice about it but 8 years into our marriage it struck me when our third boy was born with Downs Syndrome that that young man who handed me the flower after I got engaged also had Down Syndrome. God does things in our lives to help us and give us the strength we need to know that he is with us. Thank you for sharing this story. Michele